Lyme Bucket List

Thursday, June 16, 2011

A friend gave me pages from a magazine with a long, detailed article about Lyme Disease, an infected farmer and his struggles to get diagnosed and treated in Canada.
Lots of information, details, pictures, quotes, interviews with other people, stories from other patients and their (mis)treatment by the medical profession, etc.

I've scanned and made a PDF of the article, since the magazine does not make it available online. If you want to download and print to read, please go to the 4shared link. The folder contains also two of the recorded items a friend made for me (one from May 2010 and the other from May 2011).

Choose the file you want to download and a new screen opens. Click the green Download button and wait for the countdown to reach 0 before you can see the download link.

Saturday, June 11, 2011

Oh man, just had a total enjoyable moment! Since the doctor put me on the strict diet - absolutely no sugar in any form, no potatoes, no starch, no gluten - I've been trying to adapt and make do. Having brown rice instead of white was no problem, just had to tweak the rice cooker a bit in order to get it nice and soft. But -- missing a simple slice of bread, sometimes just with peanut butter (no peanuts allowed either) - that became a physical pain now and then. It was so easy to come home from work, and have a slice of whole-wheat toast sometimes since we would seldom have supper before 7:30 pm or later.

Now, the pure diet of proteins and greens missed something. Sure we found crackers, but they don't fill the hole! Nice for a snack now and then, but not a meal.

A while ago we visited the celiac store here in town, called Melissa's. With the owner's help we went through everything, trying to find a bread or a loaf mix without sugar, yeast or gluten. Not easy!

We found one, but have been putting off baking it. Today, I was desperate for something more solid to eat. Fruit and plain yogurt for breakfast, black rooibos tea -- by 10 am I needed something more. So, mixed up the bread, adding a packet of Stevia (sweetener), an egg and milk to the mixture.

The loaf baked up beautifully and sliced cleanly, without crumbling like some other of the gluten-free loaves we've seen before.

Last night, caring, dear friend Carolyn gave me a jar of almond butter since I'm not allowed peanut anything. So --- toasted up a slice of this loaf, slathered nut butter on top, and tasted carefully .... only to almost swoon with the joy of it!

Arno promised me toast, bacon and eggs for tomorrow morning so two slices in the fridge and the rest frozen to be used as needed.

Friday, June 10, 2011

Since the severe reactions and my body rejecting the meds in December and January, I've had to set up drug allergy testing at Sunnybrook Hospital. For those not in the GTA, that's way across the city, driving along the super-highway named 401, the busiest in North America, and not something I fancy!

So, date made in early March for June 8th, at 7:30 am. Psyched myself up for the drive and managed it with not too much stress - other than the borrowed GPS sucky cup thingy dropping off in the middle of the drive and scaring me half to death!

Arrived at the Hospital at 7:00 am with nobody yet waiting, which was very pleasing, knowing that the 5 hour ordeal can start pretty soon! Until I tried to report to the office and was faced by an irate woman, who told me there were no tests scheduled for June 8th, that she has been there for three months and there never has been a test for that date.

When I pulled out the original sheet with the handwritten notes (by the clinic attendant, no less, very distinct handwriting), showing exactly that date, she became even more agitated, told me she was alone, had no nurse, and what did I want her to do?

My reply that I had sent a fax two days before the test, to list meds and supplements and to ask if any should be dropped for the allergy test on June 8, she tersely said she gets 40 faxes a day, has no time to look at them all, and is "a lone paper-hanger".

Yes, I've filed complaints with the hospital immediately, but still haven't heard back (3 days later). So wrote a letter and mailed that off today. I have to go back next Friday for the test to take place, even though the original nurse told me that drug allergy testing is only done on Wednesdays. Hopefully this one will be confirmed properly before the trek is attempted again!

Positive notes: I braved the 401 and survived it without making dents in the steering wheel and chewing lips and cheeks to pieces! So, it is a practice run for the next three times to go for three different allergy tests (Zithromax, Penicillin and Cephalosporins).

Monday, June 06, 2011

The last month has been a whirlwind!
In March, my treatment in Canada has been halted unexpectedly. Eye infections came fast and hard, 6 in less than 5 weeks, one landing me in ER. More dramas happened and I knew I was in trouble.

On May 3rd I managed to see a Lyme doctor in the States (7 hours away), who diagnosed me with two co-infections, Bartonella and Babesia. She gave a heap of prescriptions, which I had to try and fill in Canada or order and pay for myself.

The severly strict diet is not fun, and an ongoing process to try and prevent the shakes and light-headedness as my blood-sugar falls. These Lyme bugs thrive on sugar, so starving myself from even the smallest bit of sugar, helps to starve them too.

The meds and supplements take hours to sort out and put into containers to try and keep them straight. Here's a view of some of them to take every day (in the foreground), minus the 4 liquid supplements, the probiotics and another vitamin.

It is an adventure trying to keep them straight, since some must be taken first thing, some 20 minutes before a meal, some not with another, one with a full meal, the probiotics of course an hour apart from any antibiotic ... Fun!

I firmly believe that the Auum Omega3 Sublingual oil I started using in June 2009, helped more than just a little to protect my brain from the ravaging effects of the Lyme spirochetes, and helped my energy levels and thought processes. My testimonial is online, if you want to read that. And if you want to try Auum yourself (only available in Canada), please let me know.
CLICK: Auum Omega3 Oil Choose the "Adults" tab - currently the 2nd entry on the page. The video clip can be played if you like to hear more. Auum is also used successfully for ADD, ADHD, Autism, Aspergers, and others.

Sunday, June 05, 2011

No postings on the blog during the last two weeks, while we were on vacation. However, while we were away, friend Amanda in Virginia Beach cajoled family and friends to join her on a Lyme Awareness Walk. She wanted T-shirts, so I ordered from trusty Vistaprint to be delivered at her address.

There were over 200 walkers, and the first effort brought in several thousand $ to be used for research, etc!

I'm so very grateful to the five of you for walking and spreading awareness. Thank you!